Young mother dies following year-long battle with cervical cancer because she was too young for a smear test

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As reported by The Telegraph on August 23rd 2015, a young mother (not pictured above) in the UK died from cervical cancer after being classed as too young for a smear test which could have saved her life.

Rachel Sarjantson, 24, battled the disease for a year before her death, which her family has described as “completely avoidable”.

The legal age for a smear test is 25, and despite her being called early for the test, it was too late as the aggressive cancer had already taken over her body.

In Australia The National Cervical Screening Program currently recommends all women aged between 18 and 70 who have ever been sexually active have regular Pap tests. However, there will be changes as at 1 May 2017 and the renewed National Cervical Screening Program will invite women aged 25 to 74 years, both HPV vaccinated and unvaccinated, to undertake an HPV test  every 5 years.Please refer to the below.

 

Upcoming changes to the program

The Australian Government has now accepted the evidence based recommendations of the Medical Services Advisory Committee (MSAC) that a primary human papillomavirus (HP) test should replace the current Pap test for cervical screening. This will ensure Australian women will have access to a cervical screening program that is safe, effective, efficient and based on current evidence.
The renewed National Cervical Screening Program will commence on 1 May 2017 when the HPV screening test will become available on the Medicare Benefits Schedule and the National Cancer Screening Register will be in place to support the renewed clinical pathway. More on these future changes can be found at The National Cervical Screening Program.

Lynch Syndrome: hormonal factors ‘lower endometrial cancer risk’

cervix An interesting article in MedicalNewsToday relating to Lynch Syndrome, also referred to as hereditary nonpolyposis colon cancer. Lynch syndrome is most commonly associated with a greater risk of colorectal cancer, accounting for 3-5% of all cases. However, women with Lynch syndrome are also at 40-60% greater risk of developing endometrial cancer – a cancer that begins in the lining of the uterus, called the endometrium.

 

Out and About….Grill’d Subiaco

At Grill’d Subiaco today with Vanessa Watson & Catherine Aurubind (who run the chronic pelvic pain support group). Grill’d Subiaco are donating $500 back into the community every month split between 3 local community groups $300 / $100 / $100. We’d love your support in receiving the highest $300 donation! Simply head to Grill’d Subiaco (Subiaco Square Cnr Roberts & Rokeby Rd) by the end of this month have a burger or fries & pop the token into our jar.

Cancer and Sex

Rekindle Study Project Cancer and sex.  These are two words not typically associated together.  Unfortunately, after cancer treatment ends many cancer survivors are left with sexual changes that when left unaddressed can become long-term problems. Decreased sex drive, changes in sexual function and problems with intimacy can worsen quality of life for cancer survivors.  Partners also experience this burden, such that as survivor’s functioning worsens, they report decreased sexual satisfaction as well.

 

The good news is that there are strategies and treatments that can manage these sexual changes and enhance sexual wellbeing.  Unfortunately, most cancer survivors are not informed about these treatments and do not get the support they need.  Embarrassment, shame and lack of access are barriers blocking those in need from getting help.

 

Researchers at the University of Sydney and Cancer Council NSW have worked together to build Rekindle to improve sexual wellbeing after cancer. Rekindle is a web-based resource for ALL cancer survivors and their partners of all genders and sexual orientations.  Rekindle teaches proven strategies to enhance sexual wellbeing and answers many of the questions survivors are left with after treatment.   Rekindle is mobile optimized and can be accessed on a computer, tablet or smart phone in the privacy of their home 24/7.  Rekindle provides support from other cancer survivors and partners who share their stories in video testimonials, hopefully making users feel less alone and more empowered to take control of their sexual wellbeing after cancer.

 

To sign up or find out more visit rekindleonline.org.au or call 1 300 85 44 37.

The study has ethics approval and are now seeking patient referrals and recruitment. If you are interested please go to http://rekindleonline.org.au/

Sexual Health – Sexually Transmitted Infections Awareness Month Week 2: Share Your Story

April 2014 Share your story

Today GAIN Inc. is honoured to share with you this personal story of sexual health.  Amy (not her real name) provided her story which she would like to share.

I am a young, happy and healthy professional who like other women. In my late 20’s I met an amazing guy or so I thought. My relationship with him was for 3 years and we were inseparable. He was also very close to my family. However, he ended it with me exactly 3 years later and I was devastated. Shortly after this I noticed some little lumps around my vagina and inside my vagina. They became quite painful and a few started to get a little bigger. I was starting to feel very scared.

I made an appointment to see my gp and he made the diagnosis of genital warts. I was shocked as my ex-boyfriend was my first boyfriend and when I asked how you can develop warts I was told through sexual contact and that it is a sexually transmitted infection.

I was prescribed a cream to put on the warts, which would make the skin peel off along with the warts. In the meantime I was having several baths a day with salt to help relieve the pain. It was so painful that I couldn’t even wear pants and just had to keep sitting in the bath. I was feeling very down, embarrassed and pretty ashamed that I developed this. How would I explain this to another partner?

I contacted my ex-boyfriend and he didn’t want to know about it and also tried contacting his then new girlfriend to no avail. I was just devastated that he didn’t want to talk about it or even acknowledge it.

Nevertheless, I was also told by my gp that I would need to begin having pap smears and also get tested for the human papilloma virus (HPV) as genital warts are caused by HPV. Shortly after this test I was also found to have abnormal changes in the cells of my cervix. This really scared me as I am aware that some types of HPV can lead to cervical cancer.

Apparently, I had low-grade squamous intraepithelial lesions (LSIL). I was then told to have a colposcopy and a repeat pap smear in 6 months, which came up normal.

A few years following the initial diagnosis of genital warts, the warts came back and had to be treated again. This again was very devastating and embarrassing. It was also more painful that the first outbreak. Following this and now in my early 30’s I have still been having regular pap smears and changes in the cells of my cervix have again been found. I was referred again for a colposcopy (examination of a woman’s cervix (or neck of womb) using a special microscope called a colposcope. The colposcope can also be used to examine for abnormal cells in the woman’s genital tract, either inside or on the outside of the vagina) and a biopsy was performed. The results came back normal again but am having to be seen annually.

Unfortunately, I still haven’t found another partner and feel quite anxious about starting another relationship with someone as I will have to be open about my medical history and it really scares me let alone at how embarrassed and ashamed I feel.

I share my story as I want other women to take charge of their sexual health and be diligent and cautious of whom they become intimate with and the importance of having regular health checks especially if you are sexually active. The anxiety, stress, pain and shame are not worth it for any relationship or one night fling.

 

 

 

 

Sexual Health – Sexually Transmitted Infections Awareness Month Week 1: Information, Resources & Events

Sexual health information, resources, events button

GAIN Inc’s third monthly series of promoting women’s gynaecological health focuses on Sexual Health, which includes the prevalence of sexual problems arising from a range of gynae conditions and sexually transmitted infections (STI’s). Did you know that in Australia, STI’s notifications have been on the rise for the past decade. There was 80,800 new notifications of chlamydia in Australia in 2011, a 7% increase from 2010. If left untreated, chlamydia infection can cause pelvic inflammatory disease and tubal infertility in women. Another STI is the Human Papillomavirus (HPV). A few of the many types of HPV have been linked with causing abnormalities of the cervix and in some cases the development of cervical cancer.

In order to find out more about Sexual health and STI’s, we encourage you to visit these reputable websites

INFORMATION AND RESOURCES:

See below for a list of Australian websites where you can find information on sexual Health – STI’s:

Family Planning WA

Government of WA – Department of Health

Australian Government

Victorian Government Better Health Channel

Burnet Institute

WA Cervical Cancer Prevention Program

Healthdirect Australia

Australian Government – Psychosexual Care

Australian Government – National Centre for Gynaecological Cancers

If you or anyone you know would like to share your story, please email enquiries@gain.org.au 

Join GAIN Inc on Facebook: https://www.facebook.com/pages/GAIN-Inc/441517922555628 or twitter @GAIN_Inc

Join GAIN Inc next week when we share a personal story about sexual health.

 

 

 

 

 

Endometriosis Awareness Month Week 2: Share Your Story

Share your story March 2014

Today we are thrilled to be joined by Alex, an incredible young woman who lives with Endometriosis.  We are privileged to share Alex’s story on the GAIN Inc website.  Alex is the author of The Endo Diaries website so please check it out along with her facebook page here.  

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Entering your teenage years is hard – for everyone! There’s a
whole lot of stuff that begins and it’s often hard to handle…
Little did I know, that at 12 years of age my life with Endometriosis
was also beginning.

In year 7 I became overwhelmed with chronic pain. This was a time
where I wished I was making new friends at high school and taking part
in all the great classes that were offered to my peers, but instead I
was curled up on the couch for weeks at a time, in chronic pain and no
one knew what was wrong. I began to lose my appetite and food wasn’t
agreeing with me… and this caused everyone to believe that I had a
gastrointestinal condition, like irritable bowel syndrome or celiac
disease, which Endo is commonly mistaken for.
I was referred to see a fantastic gastroenterologist, who put me on
various diets, cutting out gluten and dairy and making sure I ate as
much fibre as possible… to no prevail.

Because of my age, not one doctor thought to refer me to a
gynaecologist. This meant that I spent the next 3 or 4 years,
struggling with my weight and eating disorders due to all of the diets
I was put on, and then depression, as nothing and no one was helping
me, and one ‘specialist’ even had the nerve to question if my pain
was in fact in my head, and not real at all.
When I was 17 my doctor had the bright idea to refer me to a
gynaecologist to see if there was anything they could do as he had run
out of ideas, and lone and behold I was diagnosed, after 5 long and
draining years. I felt such an overwhelming sense of relief, just to
be able to put a name to what I was experiencing, even though I had
never heard of it before, and had to learn what this condition
actually was.

I underwent my first laparoscopy and it confirmed the Endo that they
suspected was there, a lot of it. This made the pain subside for 6
months or so, until I had to undergo another, and then another… 2 of
these laparoscopy’s were done in my last two years of high school, I
missed out on quite a bit of work and had to work hard to catch up,
and I also didn’t get to attend my Year 12 social dance. But at
least I was well enough to be there graduation night. I was so proud
to make it to that night after everything I had experienced through my
schooling years – I had made it. And I proved to myself that I could
now handle whatever this illness had to throw at me.
One day while I was sitting at work this early last year, wishing I
was on the couch because of how ill I was feeling, it dawned on me
that I really needed someone to talk to about all this. I had a great
supportive workplace, fantastic parents who were there every step of
the way, great friends and now the best medical team behind me… but
I needed someone to vent to. Other than my poor mother, who, when I
told her everything I was going through, just made her feel more
hopeless as she wasn’t able to really help. None of these great
people around me understood my condition, and that wasn’t their
fault, I didn’t even know what Endo was when I was diagnosed with
it. It is a condition that affects so, so many women worldwide, and
yet it wasn’t being talked about. When looking to the internet for
answers, I saw so many similar storied to mine, so many women
struggling and looking for answers. So many women…suffering silently
in pain.

That’s when I decided that if I wanted answers and support, I needed
to educate myself on what was happening to me and put myself out
there, and not rely on others. This whole time I had been sick, it was
me that knew something else was wrong, not the doctors and health
professionals. I knew my body better than anyone else. This thought
then spanned into deciding that I wanted to eventually make it my
life’s work – and after I complete my education, I want to help
other women suffering with Endo to feel supported and feel that they
can take this condition on and still live a great life with it. After
I myself had been in the dark for so long, I decided I didn’t want
any girl in the future to feel like they have nowhere to turn.

With my new outlook on this condition, I began my blog,
www.the-endo-diaries.com to get my thoughts and feelings I was having
out in the open, and in the process I have found the amazing network
of Endo-sisters from all over the world that I have always wanted to
connect with.
Endometriosis has completely taken over my life, but in the last year
or so it has been nothing but positive. I still have bad bouts of
pain, and am still trying to find a treatment to work for me as I have
had all of the main treatments with no success. I don’t know what my
future holds or if I will be able to have children – but these days
I see the light at the end of those bad patches, and try to do nothing
but remain positive. I’m not going to let something that I can’t
fix get me down. It is your choice what happens in your life, positive
minds lead positive lives. What I say to others out there with Endo is
that if you let this condition empower and encourage you to live life
to the full in those times where you do feel well, imagine what you
could achieve.

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Many thanks again Alex for sharing your story with us.  Please join GAIN Inc again next week for our “Pro-talk”.

Endometriosis Awareness Month Week 1: Information, Resources & Events


March week 1 endometriosis button

GAIN Inc’s second monthly series of promoting women’s gynaecological health focuses on endometriosis. Quite often, endometriosis is a “hidden” pain that troubles one in ten women during their menstruation years. The symptoms can range from various forms of severe pain to heavy bleeding and even infertility.

INFORMATION AND RESOURCES:

See below for a list of fantastic Australian websites where you can find information on endometriosis:

Endometriosis Australia

Healthcare Australasia

Endometriosis Association Queensland

Better Health Channel (Victorian Government)

Jean Hailes for Women’s Health

The following website has an international list endometriosis support groups:

Worldwide Support Group Links

EVENTS

Have you noticed the many people wearing YELLOW and shop fronts decorated in YELLOW this month?  Either way, they are showing their support of ENDOMETRIOSIS AWARENESS MONTH. Do you know someone who has or is suffering from endometriosis? Why not show your support in an easy, fun and “vibrant” way by joining the March into Yellow.

March into Yellow

Endometriosis Australia Facebook 

GAIN Inc would love to know how you are getting involved in Endometriosis Awareness Month.  Join GAIN Inc on Facebook or Twitter @GAIN_Inc

Join us again next week when we share a personal story about endometriosis.

Ovarian Cancer Awareness Month: Week 4 Wrap-up

Feb 2014 monthly wrap up

We hope you enjoyed joining us this month for our series on ovarian cancer.

In week one, we shared a number of useful resources to help you learn more about this condition.  In Australia, we are privileged to have an amazing organisation dedicated to awareness and education around ovarian cancer, Ovarian Cancer Australia.  We recommend visiting their website to access their vast amount of resources.

We were privileged to share two fantastic posts with you this month. One, a personal testimony from Noreen who sadly lost her battle to ovarian cancer last year.  Her and her family’s mission is to share this story with as many women as possible and we are honoured to contribute to helping this happen.  If you haven’t read it already, please take a minute to read it here.

We also shared our first “Pro-Talk” – an article written by a health professional on our topic of the month.  A big thanks to Pauline Tanner, Gynaecology Cancer Nurse Coordinator, for helping us to learn more about ovarian cancer.

Teal Ribbon Day was on Wednesday 26th February which was celebrated around the country, promoting awareness at both community and political levels.  There were a number of media articles released including this one urging GPs to watch more carefully for the symptoms of ovarian cancer, and this one on the promotion of the ovarian cancer profile in political circles.

Please join us for March where our focus will be on Endometriosis.  We ask that you please help us share the message by liking and sharing our Facebook page and “pinning” us on Pinterest.

 

Ovarian Cancer Awareness Week 3: Pro-Talk

Feb Week 3 pro talk ovarian cancer button (2)

For week 3 of our Ovarian Cancer Awareness series, we have a contribution from Cancer Nurse Coordinator for Gynaecology, Pauline Tanner.

 

February – Ovarian Cancer Awareness Month

 

Ovarian cancer is ranked as the 6th most common cause of cancer related death in Australian women. Each year around 1400 women are diagnosed with ovarian cancer and more than 1000 will die from this.

Why?

–       There is no screening test for ovarian cancer

–       Approximately 75% of women will be diagnosed at an advanced stage.

 

Ovarian Cancer Australia has chosen February as the month to focus on raising awareness of this disease.

 

Do you know the 4 most common symptoms of ovarian cancer?

  1. Abdominal or pelvic pain
  2. Increasing abdominal size or persistent abdominal bloating
  3. Needing to urinate often or urgently
  4. Difficulty eating or feeling full quickly

If you are concerned talk to your GP

  

What are the ovaries for?

The ovaries are two small, oval-shaped organs which are part of the female reproductive system. Each month, in women of childbearing age, one of the ovaries produces an egg. The egg passes down the fallopian tube to the womb (uterus). The ovaries also produce the female sex hormones, oestrogen and progesterone. As a woman nears the ‘change of life’ (menopause) the ovaries make less of these hormones and periods gradually stop.

 

 

 “Source: Unkown”

What is the cause of ovarian cancer?

The cause of ovarian cancer is unknown, and there are many other unanswered questions.

Does this disease start in the fallopian tubes and then spread to the ovaries or are they two separate diseases that behave in a similar way?

 

There are risk factors such as;

  • Age – About two-thirds of the deaths from ovarian cancer occur in women over 55 yrs (www.medline)
  • Genetic Susceptibility;

Hereditary non-polyposis colorectal cancer (HNPCC)

Hereditary Breast and Ovarian Cancers BRCA1 & BRCA2 genes

Ashkenazi Jewish origin – significant predisposition to breast and ovarian cancer

Two genes account for almost 90% of all mutations identified (MLH1 & MLH2)

  • Prolonged use of HRT in peri and post menopausal women

 

How is ovarian cancer diagnosed?

A combination of factors can indicate ovarian cancer but diagnosis needs to be confirmed by tissue sample. There is no one screening test available.

Tests include:

  • Blood test for CA125 – a protein which is raised for a number of reasons, one being ovarian cancer
  • Ultrasound – transvaginal or abdominal
  • Examination by a specialist – gynaecologic oncologist

Major factors that determine best outcome are early and accurate diagnosis, and direct referral to a gynaecological oncologist for staging of disease (NHMRC guidelines 2004)

 

Treatments

For best outcome a collaborative, multidisciplinary approach is recommended. These health professionals work as a team, managing the woman and her family needs throughout diagnosis, treatment and palliative trajectory of her journey. (NBCC 2003, Junor 1994)

  • Surgery by a gynaecologic oncologist to remove all visible disease if possible
  • Chemotherapy – this may be given prior to surgery to reduce the disease burden and then further chemotherapy after surgery
  • Clinical trials may be available
  • Intraperitoneal chemotherapy may improve prognosis for some women

 

What else?

A diagnosis of cancer and the subsequent treatment can have a profound effect on the individual and those close to them.

Financial, emotional, physical and psychological impact.

Impact on relationships, body image, sexuality, fertility and sense of self.

Fear of recurrence and living with uncertainty for the future.

It is important to seek support from your treating team on any issues that are worrying you or your loved ones.

 

For further advise contact please speak to your GP or treating specialist.

You may also like to contact;

  1. Ovarian Cancer Australia
  2. Cancer Helpline in your state 131120